One Year
May 1, 2011, The Feather Family
Today marked the last day of the year. One year of time that has been spent on an incredible journey of self-reflection. One year since Sarah, The Carcinista, died.
In many ways, this year has been amazing. Our boys and I have learned some wonderful life skills. Not just for coping with the hard things, but for really building a good life in a new way. Many things have remained the same by design. But we have also set out to create a life that works for the three of us. A life that (I believe) Sarah would be pleased with, and proud of.
We all have come to a place of peace about where she is, and how she is still in our lives. That took time, but maybe less time for us than it could have taken. Sarah gave us all permission to come to peace, and to be able to move forward in a good way. We are embracing that as a family.
May 3, 2012 is not a sad day. At least not any more sad than any other day this week or next week or last week. We’ve come to cherish our memories of Sarah and how we were a family. We talk about Sarah at the dinner table, while driving to school, at bed time. Really, whenever it feels right. I often say to the boys how proud Sarah would be to see them with all they have accomplished. They like that. And, of course, I tell them how proud I am of them as well.
I asked the boys if they would like to have a special dinner to remember Mommy on the anniversary of her death. They both smiled, and at the exact same time blurted out, “We want ice cream for dinner!” So, we’re having ice cream. Super Mom is joining us as well. We’ll be spending some special time thinking about Sarah and talking about our wonderful memories. We’ll light some candles in her honor. And, as usual, finish the evening reading some books before the kids go to sleep.
So, if you feel like having a little time to remember our hero. Maybe you, too can eat some ice cream. Light a candle. And settle in to a good book.
Cheers,
Mr. Wonderful
The End
Wait, what? The End? What do you mean?
Well, Sarah wanted me to write this. So, I’m writing it.
A year ago, as Sarah was getting ready to say good-bye to our world as we know it, she was coming to terms with what she felt was the most likely afterlife. She had decided that she didn’t really believe in God or heaven. At least not in the way they talk about it in Church. We both used to be more comfortable with something that was closer to “the force” from Star Wars. An energy that bound everything together in a beautiful way.
A friend asked Sarah where she thought she might go after death. On April 27, 2011, Sarah responded with the following:
“I believe that life flows and ebbs and forms beings (trees, fish, dandelions, dung beetles) that get their energy from a giant pool of energy that surrounds everything (don’t ask me to get specific). When a new baby (lion cub, cockroach, seedling) is born, it takes its energy from the same pool, and when it dies, its energy returns to the pool and dissipates into a million(?) (billion?) pieces. I would prefer that our souls get to keep some of their individuality so I can come back and haunt everyone, visit the kids, go places I’d like to see. There are also a great number of people and pets that I need to see when I get there; I’ll be very disappointed if I can’t have lunch with my grandpa sometime! Maybe there’s a special package you can choose when you get there… if it’s merit-based, I certainly won’t win, but I can get a little extra-credit for making people laugh? Even if the jokes were raunchy and politically incorrect?”
Since Sarah died, she has convinced me that while the energy thing might be part of it, she also got the other part of her wish – maybe a bit of heaven on Earth.
Sarah’s nurse called the day after Sarah died, not knowing that she had passed, and asked how she was doing. When I told her she had died, she said, “I had a dream last night and Sarah had taken out her oxygen tube and wasn’t using it. I told her to put it back in so she could breath. But Sarah looked at me and said, Rose, I’m okay.”
We had a birthday party for Sarah in November. 85 people came to the house to remember her and have a nice evening meeting other friends and sharing wonderful stories. The evening was a success and I was happy to get in bed that night. At about 3 AM I woke after an experience that I cannot call a dream. Sarah was there with me before I woke. She was dressed in something resembling a Halloween costume (it was only a few days after Halloween and she loved to dress up). I said to her, “Thank you for coming.” She looked at me and smiled. There was a very warm sensation between us. She never said anything, but she didn’t have to.
Over the Thanksgiving holiday, our boys, Sarah’s parents, her sister, our nephew and I went to St. John, USVI and took Sarah with us, too. We had a wonderful week there. On Friday morning, we each took a turn spreading her ashes on the beach and in the water at Francis Bay. A place that was dear to Sarah – where she had wanted to be. It was a somber occasion, but one of great relief to us all as well. Sarah was now “home.”
The boys and I returned to St. John for another week this March to spend some time there, just the three of us. We wanted to be close to Sarah and feel her with us. And we did. The weather was perfect. We spent lots of time on the beach, we sailed a few times, we met new friends. It was fantastic. Then on the way home, Sarah spoke to me in a way I could not have ever even made up.
It turns out that Harry Connick, Jr. and his family were on St. John the same week we were there. I didn’t know, but I’m sure Sarah was all over it. When we were leaving to fly back State side, we found out that Harry Connick and his family were on the same flight we were taking back to Newark.
Before I go on, if you have not read the story about Sarah meeting Harry Connick, Jr. on April 28, 2011, then you have to read that first. Otherwise, read on…
The boys and I boarded the plane knowing we had three separate seats around the plane. I had hopes of getting people to move so at least the boys could sit together, but with a full flight I was not feeling very good about it.
Sarah stepped in, and made it all come together.
Seat #1 was in row 7. A nice woman and her 6 year old daughter had an empty seat for my youngest. He was thrilled and very happy to have a playmate for the flight. Of course, my oldest said, “Dad, I want to sit with a kid, too!”
Seat #2 was in row 11. A nice woman and her son with the empty seat next to the window. #2 was happy. So was I. Stress relieved! Now back to my seat.
Seat #3 was in row 29. I arrive at my seat to find an empty row. Oh well. The boys are happy, no sense in dragging them back here. And, I’m sure someone will end up sitting here anyway. I sat and waited.
After the plane was almost full, a man ended up standing next to me. I looked up and it was Harry Connick, Jr. I played it cool, but was in complete shock. He and his younger daughter ended up sitting next to me for the flight.
Harry was really nice. We talked for maybe 15 minutes, but that was all I needed. I really just wanted to be able to thank him for what he had done (unknowingly) for Sarah. He was honored to hear the story and was very thankful. When we got off the plane, he introduced me to his wife, Jill, and his older daughter as well. To be honest, they all were wonderful and asked about Sarah. It was a very nice experience.
Good Karma? Crazy coincidence? There are chance things that happen in our lives, but I firmly believe that this was Sarah, in a higher power, intervening and saying, “Ed, thank you. I’m doing great. And so are you and the boys.” Funny, now that I think of it, maybe she was also saying “thank you” to Harry at the same time. Two for the price of one. Nice work Sarah.
So, is this “The End”?
No! The Carcinista is to be continued…
A Run for Sarah
On Monday, April 16, 2012, I will run in the Boston Marathon as part of the Dana Farber Marathon Challenge team.
While this will be my third Boston, it will be the first without Sarah cheering me on from the sidelines. I last ran in 2009, and I remember running through Wellesley close to the half-way point, seeing her there with our boys. I yelled out as loud as I could, “I love you, Sarah.” I remember the pride and love I felt as I saw them there together. And I remember my tears, knowing we had a battle ahead of us that was not going to be easy.
As I trained throughout this winter, I’ve thought long and hard about Sarah. I’ve thought of things we used to talk about, or things we did together. The way she used to encourage me. There were so many wonderful things she did for us. An integral part of our family that made us whole.
I’ve also thought of her strength and how she just kept going, on and on with all the surgeries, chemotherapy and trials to see if we could find something that would work. She never gave up. And this is a lesson that I take to heart. She’s with me every day. Every time I go running I find a deep strength knowing she is there.
I made a short film about running and training for Boston over the winter. But, it’s really not about me. It’s about Sarah and all she did for our family. It’s about that amazing strength she gave us.
When I run on Monday, I will be running for Sarah. I will be running for our boys. I will be running for all our friends and family. I will be running for our friends who have died from cancer over the past year. I will be running for our friends who are still fighting and surviving. And I will be running for a future without cancer. If you would like to support my run, please watch this short film. It’s only 3 minutes long. And if you can make a donation to the innovative research program at Dana Farber, please visit my donation page. 100% of funds raised go directly to cancer research programs.
Lastly, please share this with your friends. Let’s remember Sarah, the Carcinista, as we approach May 3rd.
With love,
Mr. Wonderful
Transformation, turning points and clarity in life.
Our great friend and fellow blogger and radio host, Mel Majoros, AKA “The Cancer Warrior“, asked me to give her some thoughts about cancer awareness during September, Ovarian Cancer Awareness Month. I thought about it and decided to do something a little different: two stories about transformation, turning points and clarity in life – both before and after losing Sarah to ovarian cancer.
For all you Carcinista fans, I think you will enjoy this. See it here.
Let us know what you think!
Be well,
Mr. Wonderful
All You Need Is Love
For spring break in April we visited a friend’s beach house on Buzzards Bay. Originally, we were to visit our happy place in the USVI, but Sarah’s breathing was constricted so badly she could barely walk to the car. She was on supplementary oxygen 24/7 and the amount she needed was increasing weekly. Travel by plane, let alone a trip with a 9 hour flight, followed by taxi, boat and truck rides would have been impossible. Not to mention having to walk up and down almost 200 steps every time you wanted to go to the beach or have a meal. For the fit, it was fun. For Sarah, it would have been hell.
Our dear friends offered their house, and we gladly accepted. It was perfect. Only one flight of stairs. And, with it being less than two hours from our house by car, we could take the kids, the dog, and all we needed for the week. Even a portable oxygen concentrator.
While Sarah slept most afternoons, the kids and I were more adventurous. Kayaking to the playground further down the bay. Visiting the local zoo. Walking the dog down to the point. Or just playing on the beach.
Sarah stayed inside the entire week, never leaving the house. She was comfortable and safe. Reading. Writing. Sleeping. Breathing. She watched her boys through the large picture windows as they ran along the beach, looking for sea glass and shells. Playing with the dog. Enjoying their youth.
We were together. We had this one week to be a family again. Just the four of us. No one else to help, or interrupt. Just us. Together each day and night for meals. Together for reading, playing games, watching movies, talking and snuggling. It was beautiful. We discovered that this vacation was about one simple thing: love.
It gave Sarah the strength to do what she had to do. It gave us the strength we needed for our journey forward.
Before she died, Sarah asked me to write a post called: “All you need is love.” I’ve been thinking about this now for more than two months. In the early days, just after she died, our love was the cause of the deepest pain I have ever felt. Such an incredible sense of loss for me and our boys. But I embraced the pain, accepting that she had reached the end of her amazing voyage. She and I had come to a place of peace long before she died. We knew the destination, just not when we would get there.
Now, the rawness of her death is gone. The deep, searing pain is gone. The frustration and sense of “what now?” has passed. Sarah would be pleased. I’m where she wanted me to be.
What’s left? The good parts of love. The part I remember when she was there by my side. When we held hands. When we ate dinner together as a family. When we would all hold hands and shout out, ONE… TWO… THREE… FAMILY!!!!! The beauty of being a family; it’s a really good, strong feeling that fills my heart every day. It’s not hard – all I have to do is look at our boys. I believe they feel it, too. I can see it in their smiles.
This week, we’re back at our friend’s house on the beach again. I had to work, so Supermom came back up and spent the week with us, taking care of the kids like the champ she is, while I made the long slog in traffic to and from Boston. It’s been really nice having her here. We all miss Sarah, but being here together makes it all okay.
As I think about all this love and how important it has been to our family, it has made me think of Sarah’s friends; OUR friends. So many people have grieved for Sarah and miss her in their own way. Yes, it’s different from how the boys and I miss her, but there are so many who loved her – and for many different reasons.
Over the past months I’ve discovered that different people express their love in different ways. Some send cards. Some make donations. Some call, email or post on FB to say “hi” and see how we’re doing. Some post on Sarah’s or The Carcinista’s FB pages to say they miss her or are thinking of her. Some ask us over for dinner or to spend the weekend with them. Some make things and/or sell things to honor her and make donations to her favorite charities. Some are running and biking great distances to honor her by raising money for cancer research and aid. Many are there for us whenever we need a little boost. And every one of those friends is taking time out of their busy lives to show their love in their own way. What works for them. What makes them feel better. And that’s okay.
So, no matter how love comes or is shown, sarah was right: love is special. It is the power that keeps us together when things get really tough. Sarah’s love will always be a part of our family. And we are glad that we’re able to share a bit of that love with you, too. And glad that you are willing to share a bit of your love for Sarah with us.
All you need is love.
Mr. Wonderful
A Hundred Gs, Part II
We ate so many of these it's scary. And delicious.
On Thursday night before Christmas, while Mr. Wonderful and I were just settling down to another exciting read of The Deathly Hallows with the cherubs, the doorbell rang. Seven o’clock? On a weeknight? (Good grief, I hope it’s not carolers – usually four or five glöggs into their celebration, they force you to stand, freezing, in the doorway and smile inanely while they try to remember the words to “Good King Wenceslas”. Erm, sorry — back to the story.)
Mr. W went to open the door, and up the stairs trooped old friends, neighbors, new friends, their families and kids, totaling about ten merrymakers. After hugs and introductions all around, the Organizer, I’ll call her, and her daughter passed me a big folder full of notes and drawings, plus a beautiful, handmade card with a big wad of cash. “What’s this?” I asked.
“We know you already bought your boots, but a bunch of your readers and supporters got together and took up a collection for you, so you have some mad money to have fun with. Buy clothes, books from your reading list, take your boys out for dinner, whatever you want. Just enjoy it,” Ms. O said.
It was a big pile of money, and I was really floored. See, I’m not used to being the center of attention, and I felt very humbled by everyone’s generosity. More hugs all around, and wishes for Happy Holidays, and they were off. I felt very warm and fuzzy as we went to find out what the Dark Lord was up to that night.
It wasn’t until the next morning, during a lull in the packing for our weekend trip to Norman-Rockwell-gorgeous Vermont, that I had time to sit down and really examine the folder full of notes. Not only was there the beautiful card and generous gift from those who gave cash, but there were at least ten more notes, checks, and gift cards from other blog-readers and assorted supporters from all over my life: neighbors, friends-of-friends, college friends I haven’t seen in twenty years, Mr. W’s co-worker friends. I was rendered completely speechless. (And you can imagine how difficult that is.)
My initial reaction was, “I don’t deserve this. I’m going to donate it to Ovations.” Mr. W talked me out of it: he said, “These are people who gave to YOU to help you feel better while you’re feeling horrible. They want you to spend it for yourself, to make you happy. Use it, enjoy it. You deserve it.” I felt guilty, I felt greedy, but I could feel the love in all the notes, heartfelt kids’ drawings, and expressions of uplifting support, so I stopped.
And switched it to gratitude. I know that people who love us, people who read my blog, wish there were something they could do to help me get through this disease. So when the opportunity arises to bring casseroles, Christmas cookies, or donations to the Carcinista Couture Collection, they jump. They help. They get gifts from giving, too. That’s what the whole Christmas-present thing is all about.
Gratitude. I’m full.
With heartfelt thanks to Ms. O and her co-conspirators, The Instigator (BKJ), TLP, TEA, SHB, SM, SMH, KFS, JQP, JBB, H&GP, JPW, JWF, HM, K&RS, DS, and anyone else, in my chemo-brained stupor, I might have missed. You have no idea.
Photo credit here.
Let’s Be Honest
I’ve been avoiding writing this post for three or four weeks now because I know no one wants to read it. (No, I’m not dying. My CA-125 seems to be responding to the new chemo, although I have yet to feel any practical benefits.)
But things at the ol’ Casa Carcinista are, well, different since I got back from Colorado.
Sure, there’s the coughing and wheezing, the resting after a flight of stairs. The utter lack of an exercise routine. But I’m talking about more meta-changes.
For the past four-and-a-half years, we’ve been sailing along through open seas, scanning the horizon with our telescopes, peering from the crow’s nest at the edge of the world, looking for signs of what’s to come. For that time, there’s been no sign of anything, just flat horizon. Some days we’ve had calm seas, and picnics on the deck; other days have been stormy and I’ve stayed below decks. We’ve just kept sailing, waiting and watching.
Now, there’s land on the horizon. Distant, hazy, indistinct, but it’s there. And that’s where we’re sailing. Don’t know how long it’s going to take us to get there, nor whether we’ll change course and sail somewhere else first, but there’s no doubt of my destination.
I think what triggered this all was the realization, in Estes Park, that I was not well. For the first time, really, since forever, I was sick and not getting better. There were things that I just couldn’t do because of cancer, and the likelihood that I ever would be able to do them was small and shrinking. Even during my IP chemo routine in 2006 (the energy nadir of my life), I was able to drag myself to my best friend’s wedding as MOH and even threw down a little swing with my sweetie. Sure, I paid for it for days, but it was a hoot, and I got better. I’m still waiting to feel as well as I did before FD. (Nothing personal, FD – I still love you.)
Strangely, I’ve found these recent changes in my life almost comforting. Where the null-sum of cancer is undoubtedly the waiting, the uncertainty that comes while a surgery date approaches, or while you’re twiddling your thumbs until the scan results come back, any kind of certainty in this free-for-all can be the equivalent of a neatly solved equation, exhaling a long-held breath. As our therapist reminded us this morning, we’ve entered the last healthy step of the stages of grief: acceptance. Not that my demise is imminent, but that it’s out there, on the horizon, whether we’re sailing there directly or around the Horn first. Can you imagine setting out on a journey that will last the rest of your life and not knowing where you’re going or when you’ll get there? (And forget about knowing what to pack.) You see my point.
Even more strangely, a field of calm seems to have settled over Casa Carcinista. With this acceptance has come relinquishing of closely-held argument positions, reductions in conflicts, a willingness to compromise and see the other guy’s point of view. The little brown house is full to bursting with love. Mr. W and I are more likely than we used to be to drop what we’re doing and have a hug, or sit at the table after the boys are excused and just talk quietly about our day. We listen more closely when our kids stop us to talk. We are always available for snuggles. We are focusing on the stuff that really matters – building and maintaining healthy relationships, following family traditions, spending time together – and, for the most part, filtering out the dross.
So no, since you asked, I’m not scared. There are still plenty of things I’m pissed off about, and for damned sure I’m not anywhere near finished fighting this battle. But the cloud of acceptance and love that has descended over Casa Carcinista has made us better people, and I wouldn’t trade that for a house at the beach.
And while we are speaking of beaches... here's my favorite.
Photo courtesy Mr. Wonderful.
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Kids Say the Darndest Things, Vol. II
Well, husbands do, too.
Mr. Wonderful will be running a relay marathon in May, from Boston to Provincetown in two days or some such madness, up all night and riding in one of two vans with eleven soon-to-be-war-buddies while carbo-loading. Some of the group met for a pre-race strategy session/beer tasting at a local watering hole last week, which gave the friends-of-friends a chance to get to know one another.
My friend-whose-idea-the-team-was sent me a message after the meeting was over:
“Last night we were finding out how many at the table were divorced or divorcing (5 out of 7 – yikes!) and Mxxx asked [Mr. Wonderful] if he was divorced and he sweetly said, “No, I’m trying to hold onto my wife as long as possible.” =) Go give him a big fat hug and kiss!”
::sniff, sniff:: He’s the best. I’m a lucky gal.
(It’s okay to go barf if you need to.)
I'm a two-and-a-half time ovarian cancer survivor who is not only determined to make it to sixty but also to look damn good while getting there. My two boys, husband, and dog are counting on me to get out of bed every day, so I might as well wear something cute and make each one COUNT. I'd love to hear from you about your odyssey - sharing makes it all easier to take. And laugh at.
The Carcinista 